Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Warm Fuzzies

mamaupupup

By mamaupupup
in Coping with Celiac Disease

Recommended Posts

mamaupupup Contributor
mamaupupup
Posted

Hi everyone,

Just a quick note to say that I appreciate you all very much. I had a rough night out at a great restaurant--the food and service were perfect, but one of my girlfriends questioned whether or not Celiac is an actual disease...oh boy!

I'm thinking of all of you--each one of us has far too many similar stories to this. Someday Celiac will be widely understood and accepted.

Until then, thank you all for being so supportive, helpful, and just plain wonderful!

Have a great night!

xoxoxoxoxox

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Got that freinds email address? If you do maybe send her some links from the NIH or other reputable sites about the disease. Hopefully you didn't let that person ruin the event for you. At least the food and service were good and you know you can safely go back and have a good meal but perhaps without that 'freind'.

shadowicewolf Proficient
shadowicewolf
Posted

Ignorance is bliss as they say.

SMDBill Apprentice
SMDBill
Posted

That's like the argument that 'surely a little bit won't hurt you once in a while'. Ugggggg.

mamaupupup Contributor
mamaupupup
Posted
  • Author

Thanks so much! I have to say I was a bit passive-aggressive on facebook today (I know she's on it constantly...). Here is my post:

I've been asked lots of Celiac questions recently and my actions to protect myself and my family have been called in to question as well. I am lucky enough to have the excellent care of Dr. Gregory Harmon and Nancee Jaffe from UCLA, my kids see Dr. Michelle Pietzak at Children's Hospital Los Angeles. These individuals are on the forefront of Celiac care and research. I wish everyone had access to such excellent healthcare, advice, and compassion.

I should have added: and the constant guidance and support from the wonderful people on the Celiac.com forum.

xoxox

GottaSki Mentor
GottaSki
Posted

You are fortunate indeed to have Dr. Harmon - he diagnosed me at UCSD and I miss him very much!

Glad you found a safe restaurant - don't let the ignorant get you down.

I love your fb post - I hope your friend sees it and spends a little time educating herself - one person at a time - we will change the tide.

mamaupupup Contributor
mamaupupup
Posted
  • Author

Thank you!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,014
    • Most Online (within 30 mins)
      7,748
    Scott Ryan
    Newest Member
    Scott Ryan
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jmartes71
      Fighting for a name

      By Jmartes71 · Posted

      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
    • trents
      Celiac getting dentures

      By trents · Posted

      @Martha Mitchell, your reaction to the lens implant with gluten sounds like it could be an allergic reaction rather than a celiac reaction. It is possible for a celiac to be also allergic to gluten as it is a protein component in wheat, barley and rye.
    • JoJo0611
      Chances of being coeliac

      By JoJo0611 · Posted

      Thank you all. 
    • Martha Mitchell
      Celiac getting dentures

      By Martha Mitchell · Posted

      Scott I also have different symptoms than most people. It affects me bad. Stomach ache, headache, nauseous, heart racing, whole body shaking, can't walk then my throat starts to close. It attacks my nervous system. The only thing that saves me is a 1/2 of Xanax...it calms down my nervous system 
    • Martha Mitchell
      Celiac getting dentures

      By Martha Mitchell · Posted

      Scott Adams. I was dealing with a DR that didn't care about me being celiac. I repeatedly told him that I was celiac and is everything gluten-free. He put an acrylic lens from j&j. I called the company to ask about gluten and was told yes that the acrylic they use has gluten....then they back tracked immediately and stopped talking to me. The Dr didn't care that I was having issues. It took me 6 months and a lot of sickness to get it removed.... which can only happen within 6 months. The Dr that took it out said that it was fused and that's why I lost vision. If they would have removed it right away everything would be fine. He put in a silicone one that was gluten-free and I've had no issues at all in the other eye. Do not do acrylic!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.